Is a diagnosis necessary

[RobinAnn]

Hey everyone... newbie here. I have a few questions but first my history:

Dx with Hashimoto's in 2003. Had SEVERE adverse reaction to T4 no idea why but then switched to T3. But T4 opened a can of worms. Immediately after starting T4 had digestive issues. Aften a few years tried gluten free. No help but stayed on gluten-free diet. 2013 gave in to blt cravings and had wheat sandwiches everyday for a week. Woke up one morning with muscles so swollen or inflammed couldn't  get out of bed. No more gluten. Also had blood in stool. 2014 finally dx with pancreas insuffiency. Digestion improved and blood stopped but at same time also dx with colitis (i strongly doubt this dx and don't  take colitis drugs). A year later added cheese back into my diet. Bleeding came back. No more dairy now, blood gone. Now i might have gastritis and sibo. Endoscopy planned for October. 23andMe testing also shows a single mutation for celiac.

If i just stay Gluten-free Casein-free does it really matter is i get a dx for celiac?

Celiac disease and gluten intolerance... same thing?

Is blood in stool common with celiac disease?

Is colitis often a wrong dx for celiac disease.

Can a biopsy dx celiac when already Gluten-free Casein-free? 

Which end of the small intestines used for biopsy? Meaning, when doc looks at my stomach can he do small intestine biopsy or do i need a colonoscopy instead?

[tessa25]

Get the full celiac blood test.. It includes:

TTG IGA

TTG IGG

DGP IGA

DGP IGG

EMA

IGA

It's just a blood test, no reason not to do it. You have to be eating gluten for 12 weeks for the test to not show a false negative. One slice of bread per day is enough. A positive on any one test is supposed to lead to an endoscopy to confirm celiac. Since you're already getting an endoscopy you're good to go there.

There are several things you could have, digestion-wise, so I'd do the tests.

Celiac requires 100% compliance to the diet, no cheating, so it's good to test for it.

[Victoria1234]

A biopsy can diagnose celiac disease while gluten-free if your body hasn't healed yet. Depending on how damaged you were it can take a different amount of time to go back to normal. Most places recommend eating gluten at least 2 weeks before biopsy, and lots of people here had negative results doing so.  I was slightly confused as to how long you have been without gluten?  

[squirmingitch]

Looks like you've been gluten-free for 3 years now this last time? I wouldn't give a snowballs chance in hell that you will test positive on either blood or endoscopy at this point without doing a full gluten challenge.

[RobinAnn]

The thought of eating gluten makes me nervous. That so does not sound like fun. I guess I'll  just stay in the dark.

What about blood in stools. Is this ever seen with celiac disease.

[cyclinglady]

You should find the cause of blood in your stool.  I do not think that blood in the stool is common for most celiacs.  You can have more than one autoimmune issue or cancer going on.    We have several members who have both celiac disease and Ulcerative Colitis or Crohn's. 

Either end of the small intestine can be biopsied for celiac disease.  The most common is obtained through endoscopy.  Since you are getting the endoscopy, you might consider a gluten challenge of eating a slice of bread (or equivalent) for two weeks.  Two weeks is too short of time for antibodies to show up in blood work.  

The gluten free diet can work for celiac disease but no one knows what triggers other autoimmune disorders.  This might not be related to celiac disease.